Let’s introduce ourselves!
Let’s introduce ourselves! .Hi everybody… nicked the idea from the secondarys forum. Although I see there was a valiant attempt to introduce ourselves beforehand - it got hidden a bit in the moderators hello and the changeover of sites. So maybe a good idea if we try again
I was diagnosed with high grade DCIS in April 04, I then had a WLE - they did not get clear margins - I was then told that as the DCIS was so extensive and aggressive I should have a mastectomy - had an informed contact (told this story lots of times - so shortened version). who checked my paths and said it was not necessary - got referred to great consultant got second opionion and she did MRI and second WLE with oncoplastic rearrangement - yippee clear margins - successful. Given wrong advice on combination of meds on release of hospital and as a result had to have another operation (don’t ask!) Had 25 sessions of radiotherapy during which my mum died suddenly - had to delay the funeral until after completion of treatment. Not on tamoxifen as I was smoking at the time - and there is a high risk of stroke with tam for smokers. I am 51 peri menopausal and occasionally get anxious about reoccurence especially as ER positive and HER2 +++ although I know HER2 status is not relevant if no invasive component can’t help wondering…Although I do know how lucky I am.
Whose next?
— —Hi - I’m not sure why there are so few posts to this forum.
My situation is pretty straightforward. I was dianosed with high grade DCIS a year ago, My consultant said that as it was spread over a large area I could be a candidate for a mastectomy. He agreed to do a WLE which did not give clear margins. So I had a second WLE which was successful. I then had 30 sessions of radiotherapy and am now on Tamoxifen. So far, apart from the fact that my periods have stopped (no great hardship for me!), I have had no adverse side effects. I do feel pretty lucky but cannot convince myself that it is behind me and think along the lines of “when it comes back” rather than “if it comes back”. Not a very positive attitude but I feel it is a realistic one.
I am 49 and pre menopausal (at least I was before starting Tamoxifen) and ER positive.
My mother had BC at 48 and died from it on her 60th burthday so that may explain why I feel as I do.
Hi there My name is Justine, my mum was diagnosed with intermediate dcis in 2003 aged 52. She had a bilateral mastectomy, mainly due to family history (she lost two sisters to bc aged 46 & 49). If she’d followed conventional guidelines she’d have had a wle & radiotherapy instead.
I’m pleased to say that mum is fine now, and doing well. She is having her blood tested against the genes (negative so far for brca1&2, although only a percentage is tested (NOT 100%)) by Addenbrooke’s genetics clinic as they believe the cancers are due to a genetic fault.
I don’t post on here very much as mum has finished all her treatment, and wasn’t offered tamoxifen, but I do glance here once in a while to check the posts and see if I can help.
Who’s next?
DCIS My name’s Jessica and I’m 36. I found a lump/thickening in my left breast at the end of September, which turned out to be high grade DCIS with one tiny spot of microinvasion. I had a WLE (no clear margins), followed by a segmental mastectomy (still no clear margins) and then a mastectomy/reconstruction at the end of October. I’ve decided not to take Tamoxifen as it makes so little difference to my odds of recurrence but have been told I should not have any more kids (I probably wouldn’t have anyway as I have two little ones already, but still would have preferred to have had the choice). I just went back to work today and am finding the return to “normality quite hard. I also feel very lucky (in breast cancer terms, not in the general scheme of things) to have caught it so early but do find it hard to believe that it won’t came back.
— hey lulu - why don’t they MRI us high graders before they operate - I know MRI’s are expensive but it must be cheaper than having two ops or even 3/4 if mastectomy/recon route. Madness!
Jessica - returning to work is really hard - let us know how it is going.
Isn’t it strange that none of us think it’s gone for good. I hope it’s just a time thing - the more time passes the more we forget about it.
waddya think?
Where is everyone else?
Another one Hi there
I’m 55 in March and STILL having periods - such a pain! I must be FULL of oestrogen.
I was diagnosed with DCIS in October 2004. I had 2 WLE with no clear margins. So I then had a mastectomy in Feb 2005. I was not tested for ER status and had no other treatment. I did not have reconstruction.
I’m living a normal life again but always have this underlying fear that it will occur on the other side, and may get further before it’s detected. Whatever makes the cells form must be still there. So I keep thinking - should I have the other one off?
And I need to find out more about MRI scans.
This forum was such a help to me when I was diagnosed, as I knew nothing and I learnt more here than I did from the hospital.
I keep lookimng in here in the hope that I can help someone else new who may be feeling like I did a year ago.
Nice to meet you all
Anne
x
hi I’m sue, was diagnosed January 2004 with wide spread dcis so had no choice but mastectomy. I had recon at the same time and have had quite a lot of trouble with it. Just had further op in November .
I have got back to normal in a practical way but like many of you expect it to come back in the other breast!!
It does not help as I have a lump in the arm pit on the side of my remaining breast. It is getting slowly more troublesome but the docs are not concerned. I feel like I am over reacting but would prefer the cut it out. They say it would cause more problems if I had it removed.
It is hard moving on when something keeps nagging away.
However reading some of the other forums I feel I have got away lightly compared to many. It is good to talk, I did not know about this forum when I was initially going through treatment. I wish I had!!!
Nice to talk to you all
All the best SueX
Hi Hi everyone
Sorry if this is a bit long. I’ve had DCIS and I think I might have become a bit obsessed with it!
I was diagnosed with intermediate grade DCIS in July 2004. My symptoms were a sticky discharge and a hypersensitive right nipple. I had the discharge for more than 4 years and during this time was referred to 2 different hospitals by my GP, both of which told me emphatically that there was nothing wrong with me. It was only when blood appeared in the discharge that it was taken seriously. A biopsy revealled a small DCIS. I was offered radiotherapy but I was convinced there was more in there and eventually (against extreme resistance from the hospital who said it was overtreatment) I managed to get them to agree to bilateral mastectomies. And when the histology came back there was indeed quite a lot more DCIS in the right breast.
I was told that mastectomy for DCIS gives a 98% cure rate, and I thought I’d feel at ease and without fear after the surgery, but I don’t. For one thing, my DCIS came within 1mm of the skin, and I have had no treatment other than mastectomy. I’ve asked my surgeon about this loads of times but she says “no need for further treatment as it was only DCIS”. But I’ve done research on the internet and lots of sources say 1cm is the absolute minimum. For another thing, I’ve seen plenty of other sources that quote much higher recurrence rates. I keep looking at the scar wondering how long before it comes back. Another thing is I’ve got this big enlarged vein in my right armpit that I’m convinced is something to do with the cancer. It’s not a clot and it’s not a lymph gland; I’ve had an ultrasound and it’s a distended axillary vein. It frightens me and I’ve nagged and nagged about it when I go for my checkups at the hospital but they always say “nothing to do with the DCIS - just a curiosity”. But the thing is, they’ve been wrong before, haven’t they?
Perhaps when my reconstruction is finished I’ll be able to think a bit more positively about things. We are the lucky ones really, aren’t we, compared to other BC patients.
Best wishes
Jellyfish
hey jacks and jellyfish …yes I know the feelings. I have 2 breast ‘mice’ (benign lumps) in my other breast. What I just cannot understand is if they are benign and they will always be so (which is what they tell me) - why do they continue to check on them?
Jelly fish I am very lucky because my surgeon is extremely meticulous and I know I am getting the very best help. Have you thought of asking for a 2nd or 3rd opinion. I think once you’ve lost confidence in your surgeons it’s very difficult to relax and feel you are in safe hands. Happy to recommend my surgeon but not sure which area you are in
Cheers Celeste
sloshing oestrogen too! …know the feeling Anne I am having menstruel tsunami’s really deeply embarassing. ~Are you on any meds?
sloshing Hi Celeste
No I’ve never been that bad I needed to go to the GP, but I just wish it would GO AWAY!
I had a break of 8 months and I thought that was it, then they came back.
Anne
Is Tamoxifen necessary after DCIS Hi to all those who ‘introduced’ themselves earlier in the month, sorry I missed it.
I had a masectomy for high grade dcis early October, it was widespread, and like others of you within 1mm of the skin. Because of this, and the fact that it was high grade, my surgeon has now offered me tamoxifen, although at first saying I wouldn’t need it as there was no lymph node involvement.
I feel very lucky, especially when I read about others experiences,but I wondered if anybody else with dcis is on Tamoxifen, and what are the side effects?
I should add I am 54, and went through the menopause 5 years ago due to hysterectomy, if I keep on like this there wont be much of me left!!!
Frenchy
Hi Frenchy …for some obscure reason I thought tamoxifen was only issued to the pre or peri menopausal - doubtless I am completely wrong.
I was high grade and was offered tam after WLE and radiotherapy - I am peri-menopausal. I declined with my onc’s agreement. My reason for doing so at the time was that as I was (still am) overweight and a smoker (not now) I was much more likely to become a stroke candidate on tamoxifen (it increases your risk) and I believe it was only going to reduce the chance of recurrence by approx 1%. I am sure we are all individual. Hopefully someone who is a bit more clued up on this can answer you better.
On a different note I see you are from Norwich this is my part of the country originally and today I rather miss it.
Take care frenchy and good to meet you
Celeste x
—Hi Frenchy, —Hi Frenchy,
I was 49 when I was diagnosed with DCIS last May and had a Mastectomy & reconstruction in July, I was going through the menopause at the time. When I went for my check with the oncologist she said she wanted me to take Tamoxafin, but if I found the side effects bad to go back and she her. I have not found it too bad, I have been taking it since last August, some of the side effects I have had are being moody, my nails are in a bad state, but they could both be due to the menopause. I have not had a period since. I wear glasses for driving and reading and the optician said that Tamoxafin can in some people affect your eye sight, so suggested eye tests every year instead of every 2 years.
I have a friend who has been on Tamoxafin since December and she is having hot flushes every night, I have them now and then. So I think it very much depends on the person.
Hope this is of help,
Lucky.
—Clinical Trials —I had a 6mm DCIS removed by WLE on 30 December and have now been told it as intermediate grade and has been removed with clear margins. I have been offered the chance to take part in a clinical trial of tamoxifen or tamoxifen and radiotherapy, the decision as to which is a random choice made by the trail organisers. My Consultant said no further treatment was necessary just 6 monthly checks but I could join the trial if I wanted. I’m not sure what to do - at the moment I feel fine and am reluctant to undergo treatment which is going to make me feel lousy, I have heard Tamofifen can have some quite unpleasant side effects, but on the other hand should I be turning down and chance of reducing the risk of a breast cancer returning. Would love to hear from anyone who is taking Tamoxifen and how they find it and any one who has any information that this sort of thing.
Clinical trials Hi Carol,
Sounds like you had a naff way of celebrating the end of the old year - lets hope the new one gets better.
I confess I am not quite clear about your treatment. I understand you have had a WLE for intermediate grade DCIS. Whether you participate in a trial or not, you should be offered radiotherapy - without radiotherapy you have a 15% chance of recurrence
with radiotherapy you have a 4% per cent chance of recurrence. There is quite a difference in those stats.
I know that were I to take tamoxifen it was only going to make a 1% difference in recurrence - so I opted (for lifestyle and other reasons) not to.
I think there is a lot to factor in when offered a place on a trial - I am of the opinion that I want what treatment is appropriate for my condition
and not to further medical science at the cost of my health. (I am naturally suspicious that scientists often get a bit too carried away with their experiments) Happily selfish and immoveable in that regard.
I’m sure others will post too, but I am a bit anxious that they may not see it - it might be better to start a new thread for maximum responses. BCC could you move this question if no other responses
Take care
Celeste
DCIS Hi, I’m Helen.
I live in Surrey.
I was diagnosed widespread DCIS in July, had mastectomy and immediate DIEP reconstruction on 17th Sept.
Like some others here, I only had 1mm margin, which worries me, but not my oncs. There was also an area of micro-invasion as well.
I am er-ve, but pr +ve, which only occurs in 5%.
I’m unable to take Tamoxifen, as I’ve had a DVT, but could take Arimidex. Howver, I’m still not sure, as I am low risk of recurrance, and do not fancy rthe side effects, such as joint pains (I already have painful arthritis.)
Like some others, I also don’t consider myself ‘clear’, as there is a higher risk of DCIS in the other breast, and I also worry about recurrance. (Could a nasty little cancer cell have gone travelling from the area of micro-invasion???)
Some days I try to stop obsessing by thinking I’m more likely to die on the M25. Other days I can’t stop worrying.
Am trying meditation, visualisation and dairy-free diet to increase my health status!
Has anyone read ‘Women Of SIlence’ by Grace Adamson? Lots of info and ideas for changing BCers lifestyles for the better.
xx HElen
confused - you will be Hey there
Sorry I am new to the forums and everyone is speaking a different language. What is a WLE what are paths and margins.I didn’t get one i don’t think.
I found a lump ( well more of a macaroni shape) had it checked had 2 mamograms and 3 biopsies trying to get a definitive answer. I was then told I had DCIS in two distinct places ( the lump I think was incidental or even co incidental) I was offerd a LH masectomy with immediate reconstruction and I have had no other treatment drugs or anything. I am going back for my nipple tattoo next month.
I have had the gene test as there is a jewish coonection on mothers side and mother had BC at 54 RH masectomy. 18 years ago.
I have accepted everything I have been advised. Is this wrong? Am I missing Something?
— Hi Venetia
A WLE is a wide local excision, which means they remove an area of the breast which they hope contains all the cancerous cells. They examine all the tissue in the ‘path’ lab and if they find clear margins around the bad area, they do not have to operate again.
If it’s widespread, as they found with me, they will end up doing a mastectomy to make sure they get it all.
I think most of us accept what we are advised because we are too scared to do otherwise.
Poor you having 3 biopsies - I honestly found that the worst thing.
And don’t worry - a year ago I didn’t know about any of this - so ask as much as you want someone will know the answer.
best wishes
Anne